Unfortunately yesterday the 5th March we had to cancel our monthly meeting. This is not something we decide lightly. I did try to get hold of everyone I can by posting on Facebook, Twitter, text and I sent 2 emails, unfortunately I cannot make individual phonecalls. On Monday night it came to my attention that my first email had not been received by some people so I sent it out using my personal CFS Unite email instead of the info one and it has still not worked. I am looking into this at the moment and if anyone has any ideas please let me know.

If you turned up on Tuesday, please accept my sincere apologies that I endeavoured to get into contact with everyone as soon as it became apparent it was going to be cancelled. All I can now ask is please check the website the morning of our meeting date and if there are any changes I will endeavour to have it on the homepage of the website by 9am. I hope this is a one off situation but please accept my sincerest apologies.

Our next meeting is Tuesday 5th February 2019 at St John's Church hall, from 13.30 until 15.30pm We will be celebrating an amazing 8 years of meetings. 8 YEARS - thank you all so much for the amazing 8 years of support and encouragement. To celebrate I hope you can join our meeting where we will have nibbles and cake to celebrate. All dates of our monthly meetings can be found on our upcoming events page on our website.

I am also thinking of hosting a coffee morning on Tuesday 19th February at my house from 10.30 until midday, so book the date in the diary and join me for a cuppa and cake or biscuits. let me know if you think you would like to join me so I can get in enough biscuits and let you know my address.

Other plans for 2019 is our quiz in April or may and later in the year as well as a BBQ and maybe more.

Sorry to mention the C word in November but it is only 2 weeks until December and a few more days after will be our December meeting. Also I urgently need some responses about the Christmas meal which I have only just got round to finalising (apologies but had another rough month with both Rebecca and I ending up in hospital on different occasions- thankfully we are both ok now so nothing to worry about.

Christmas Meeting Details :

Our next meeting is Tuesday 4th December, 13.30 till 15.30 at St John's Church Hall. The theme is Christmas with a Christmas outfit competition, a buffet and a raffle to start the celebrations. So dig those jumpers, hats, earrings out and join us for a relaxed social afternoon.

Christmas Meal:

The date of the Christmas meal is Tuesday 11th December from noon (sorry to those who attend the Fibro group but I could not get the dates changed however please do join us after for a drink). This will be at the Mermaid pub in Ipswich. If you intend to join us please could you confirm by the end of Tuesday night (this Tuesday 20th November) as I need to go in on Wednesday to confirm and please could you take a look at the menu (link below) and send me your menu choices by next Saturday. I really hope you can join us for a lovely meal. I can offer a lift for 2 people. The link for the menu is https://www.mermaidpubipswich.co.uk/menus/carvery-festive-menu-2018/

Hi all, I wish to share with you an email from Catherine Saunders who has had a book published called "Understanding Severe ME - Essential Guide for Family & Friends" in a bid to raise awareness. Please find the email below with a link to the book. I intend to get a copy when I have the funds and will share it with the group.

Dear Ipswich ME Support Group,

Great to hear there is a support group in Ipswich helping ME patients & their families cope.

Hopefully, my email will give your members a further source of information and guidance.... a book written by me, a former Severe ME Patient of Professor Findley...the consultant who used to head up the amazing ME Specialist NHS Unit in Essex, sadly now closed.

Long story short, I was very severely affected and am now approx 70% recovered...but as you know, not all severely affected patients are that lucky.

I lost over a decade of my life to this cruel illness and one of the hardest things to cope with - besides the bedpans, bedbaths, spoon feeding, light sensitivity and relentless pain - was how little my Family & Friends knew about the harsh realities of Severe ME. Like so many other patients, this caused immense stress at a time when my Carer husband and I desperately needed their understanding, support and compassion.

So, one of my goals, when strong enough, was to try and turn my own experience into something positive, something which might help all those thousands of poor families affected by Severe ME following in my wake.

To this end, I have recently published a book on Amazon: "Understanding Severe ME - Essential Guide for Family & Friends"

I lost many years to ME but I am one of the lucky ones. I had 2 x 6 week admissions to Professor Findley's renowned NHS Severe ME Unit in Essex plus the support of Specialist ME Outreach Nurses in Greater Manchester for over 3 years. These interventions helped my recovery dramatically but sadly both specialist ME units are no more. And so, in addition to explaining what the hell is going on in Severe ME, I also detail in my book what I learnt from these specialist ME Services that helped in my own recovery.

Feedback so far has been extremely positive and the book is being used far more widely than I ever anticipated:

Mild/Moderate ME Patients are asking Family & Friends to read it to explain how severe ME can become if patients are pushed.

Patients & Carers are giving a copy to their GPs.

Patients & Carers are giving a copy to local ME/CFS Clinics.

Carers of younger Patients are giving a copy to their patients' Schools/Universities.

Severe ME Patients & Carers are giving a copy to Friends & Family.

Feedback like this is wonderful. This is the ME Book I wish had been around when I was so ill, a book that could have spoken for me when I was too ill to speak for myself.

Am attaching a digital information leaflet and a copy of a letter from Professor Findley himself about my book, so you and your team can be assured it has the support of one of the most highly respected ME Specialists in the UK.

And if you would like some printed leaflets for your team and the patients you support, please just drop me a line, very happy to post some out to you for your members.

Really hope you find the book useful, and please, feel free to contact me if you have any questions at all.

Here is a shortened link to Amazon...the book is available as a Paperback and as an E-Book.

Just a little reminder that tomorrow is our monthly meeting. We have Ben coming who has worked with One life coming to talk about pacing and exercise. I will also be hopefully sorting out the Christmas meal and need some nominations for Vals flowers of hope.

I will be in touch shortly regarding Xmas meal and other information but just wanted to remind everyone the meeting is tomorrow at St John's Church Hall, 13.30 until 15.30pm.

How is it nearly November already? I hope you are keeping as well as possible in the warm weather we are still having.

Just a couple of things.

We had our quiz last Saturday and it was lovely to see so many members join us for a lovely afternoon. Details of the afternoon and its success can be found on the blog post below.

Secondly 2019 is nearly here so we are now booking the hall for 2019. The dates are below. I will also be booking two Saturdays for our quizzes and will let you know the dates once confirmed. Our meetings will still be the first Tuesday of the month 13.30 until 15.30 at St John's Church hall.

2019 Dates

5th February

5th March

2nd April

7th May

4th June

2nd July

6th August

3rd September

1st October

5th November

3rd December

Please note I have not booked January as this would be the 1st January however, if there is interest I can arrange a coffee morning to catch up with you.

The remaining dates for this year is Tuesday 6th November and the 4th December. We are also hoping to book a Christmas meal. Will let you know details soon.

On Saturday we held one of our
quizzes and was delighted to be joined by lots of our members and their family
and friends.

I am delighted to announce that we
made a brilliant £301.56p which goes towards the running of our
group.

A massive thank you goes to Lisa and
Mike for the quiz, Cathy and Margaret for being our dolly dealers, to Bryan for
his amazing cake and charity in donating it and also to David and his mum for
tea making. Thanks to everyone who donated cakes and everyone who attended to
make a great afternoon. Looking forward to the next one already.

See below for photos of the lovely
afternoon. All photos can be found on our Facebook page.

On Saturday we held one of our quizzes and was delighted to be joined by lots of our members and their family and friends.

I am delighted to announce that we made a brilliant £301.56p which goes towards the running of our group.

A massive thank you goes to Lisa and Mike for the quiz, Cathy and Margaret for being our dolly dealers, to Bryan for his amazing cake and charity in donating it and also to David and his mum for tea making. Thanks to everyone who donated cakes and everyone who attended to make a great afternoon. Looking forward to the next one already.

If you love books but have a Chronic Fatigue Condition than we are the group for you! We are a small group of book lovers who want to join a book club but cannot read as fast or as much as other people in normal book clubs. The CFS Unite book club is a book club who has the patience to work through the fatigue of reading and having to read the same page again because of brain fog, allowing you to take your time in reading a book and then discussing it either online or in person. At this time the group is on Facebook but if it becomes popular than we will look into an online forum.

Yesterday our lovely Lisa went to Aldeburgh RNLI to give them the cheque for £230, which we raised at our April quiz in memory of her Brother Phil. Lisa was very lucky to look round the Lifeboat station and meet Steve The Coxwain. Thank you to everyone who donated at our April quiz and for their support and thank you to RNLI Aldeburgh for making Lisa's day so special.

I am sure you can agree Lisa would make an lovely looking RNLI crew woman!